Healing Journey

Here are some of our group members’ experiences during their vitamin B6 toxicity journey:

Kim K.

My new doctor diagnosed my toxicity off of bloodwork my neurologist had done. He retested after three weeks and my levels were normal. He explained that my body can begin healing after the levels are normal. He said 6 to 18 months recovery for nerves and any other effected areas to heal.

Rahul A.

My name is Rahul. I am forty years old. I am from India. I came down with b6 toxicity in October 2021. This happened with just a 3 week daily dose of b6 in a b-complex capsule that had a total of 5 mg b6 in it. As I understood later, my previous intake of b6 supplements (again daily dose never exceeded 5 mg) between sep-2019 (15 days), summer 2020 (3 months) and summer 2021 (another 3 months) would also have played a role in sending me over the edge finally in October 2021. All this while, I was also eating a very healthy diet with plenty of green vegetables, fruits and whole grains. Little did I know that I was slowly but surely poisoning myself. While I jogged regularly through out this period, it was the only form of exercise I got (and one that can reduce muscle mass, if overdone and dehydrate you if you don’t know about proper hydration). I drank plenty of water too, not knowing that even excessive hydration (without the necessary minerals) can actually deplete electrolyte levels in our body through excessive hydration and resulting excessive urination. All these factors may have contributed to the slow build up and slow elimination of b6 in my body.

While B6T nearly debilitated me in October 2021, the signs of it were visible even before that time. Since Sep 2019, I had been having episodes of light sensitivity, eye pain and pressure, pins and needles, limbs getting numb (occasionally if I slept with my hands tucked under my torso or if I sat in the same position for even 15/20 mins).  I also had persistent breathlessness and dizziness which is something I blamed on a tight tummy and a stiff neck. October 2021 saw my mom getting admitted to a hospital for 3 weeks for treatment of advanced cancer. Those three weeks were very stressful with irregular eating, (along with the damn b-complex that I resumed thinking foolishly that it would give me that extra boost of energy), little exercise and low water intake.

My symptoms started in early November 2021 and were numerous. Starting with the most severe, I had tremors in my hands, wrists & fingers (which made me very clumsy), general bouts of shaking through out my body, a feeling like the nerves in my arms were on fire (initially during recoil), severe pain in forearms (right arm more than the left), bone pain in arms, extreme fatigue (had never experienced anything like it up till that point), dizziness, severe depression and anxiety, extremely cold limbs with freezing hands and many others random pains and aches that came and went.

About 4 weeks after ceasing supplementation (stopped at the end of October 2021), I got a blood test done (end of November 2021), having co-related by symptoms to b6 toxicity based on what I read on the internet. My level was 41 against a range of 8-27. 

The fact that I had consumed very low doses initially worried me. The internet had me believe that toxicity at such low doses was not possible. I dug deeper and found out a Dutch study that had seen numerous cases of people developing toxicity at doses as low as 1.5 to 2 mg per day.      

I was in pain but hunkered down, aiming to just wait out the storm. I had a long and drawn out recoil which lasted a good three months (i.e. till the end of January 2022). Then for 3 months between February and April 2022, it was a roller coaster with my symptoms swinging from bad to worse.

In May 2022, my symptoms flared very badly. I freaked out totally and started looking out again. This time, by God’s grace (called Beth Smarzik), I found the b6T website. I read the website end to end in a day and then re-read the contents several times. For the first time in 3 years, I finally began understanding what was wrong with me. I joined the FB group and quietly followed the stories of those who had recovered before me. I read the healed members spread sheet, hundreds of times over the first few weeks. 

My healing regimen:

It took me until the beginning of August 2022 to really start the protocol. This is what I did:

• I completely eliminated chicken, potatoes, corn, bananas, avocados, fenugreek, spinach etc from my diet. (In India, corn and avocados are in any case not  a part of our staple diet so this bit was not tough.). The only high b6 foods that I continued consuming in limited quantities were wheat (Indian bread called roti/chapati) and lentils (called Daal in India). I also stayed away from chickpeas and peanuts.
• My daily b6 intake in the period August 2022 to Dec 2022 was about 102% with a variation of about 5%. So, my b6 intake would have approximately varied between 97% and 107% on most days in this period. There were days when I had only about 70% of RDA, but also days when it went to 150%. Both extremes were bad in terms of worsening of symptoms.
• I did not individually track my potassium, iron, sodium, carbohydrate or protein intake. It was just too much for me. Maybe I was foolish, but all I could do was to watch b6, water and salt intake specifically and leave the rest to God. My main source of protein was eggs, milk, cheese ,yoghurt, lentils, lamb and mutton (meat mostly during the weekends only). I did not pay too much attention to the 1g of protein per kg of body weight benchmark. I think its just a big pharma gimmick (or so a Netflix documentary that I saw some time ago claimed). With the sources of protein mentioned above, even within the RDA b6 diet, I gained a bit of muscle mass in 6 months of weight training.
• My water intake was consistently above 3 liters each day (between 3.5 and 4 liters actually). This included anywhere from 200 – 400 ml of coconut water almost every day and about 200 ml of milk in my coffee. Occasionally (not more than 3 or 4 times a month), I had some orange juice as well. I added some salt (again could never get myself to measure the salt precisely), to about 1.5 to 2 litres of the 3.5 to 4 liters that I drank. I think I may have overdone the salt bit because I did not measure it precisely.
• I exercised with light weights about 3 to 4 times a week (no more than 30 min sessions) and ran 5 kilometers about once or twice a week. I also walked from the metro station to my office and on the way back home which gave me about 20 mins of walking 5 times a week. I joined a gymnasium and made sure I exercised different parts of my body on different days. This is because it is possible for b6 to be expressed only by those muscles that are being exercised. I did not want any of this poison lurking behind. Exercise flared me up for the first four months. My tremors and shaking would just exacerbate for hours together after every session at the gym. Month five onwards, I started feeling better after exercise. 
• I was terribly depressed and my family’s lack of understanding of what I was going through made it worse. They thought I was going nuts measuring every ounce of food that I consumed. During this period, I just thanked god for whatever he had given me (a loving family, a good job) and tried making myself useful to the world. It was not easy.  

Things that I mostly got right:

• RDA (as mentioned above).
• Near elimination of many high b6 foods
• Whole body Exercise
• Overall hydration (consistently 3+ liters of water, with salt in 1.5 to 2 liters)
• Managed to stay away from any extra supplements and medications. (just clenched my teeth and put up with the pain to avoid too many pain killers)

Things that I could have done better:

• Sticking to not more than 30% RDA in every meal (I failed several times with disastrous consequences. Days that I had to travel for work were very tough). Being consistent with small defined meals was a problem (it was either a bit over the 30% limit or no b6 at all if I skipped the meal. (Initially I was also scared of eating because it gave me instantaneous reactions)  
• I went below 80% several times during the period Aug 2022 and Dec 2022. It made my symptoms even worse. The shaking and tremors would amplify and my arms would ache even more. My limbs, especially the hands and feet would go ice cold. Generally, it was my right arm that ached more. When I went too low on b6, the left arm and my legs would start aching as well.
• I could not slowly sip my water, salted water, coconut water all day long (always had to chug given the nature of my job)
• There was not even a period of 2 consecutive weeks when I got all parts of the protocol right. At any point, I was either erring in one or more of the three aspects (diet, exercise & hydration)
• I could have kept a better track record of my blood pressure, blood sugar, thyroid and vitamin levels (B1, B12, D etc.)
• I should have eliminated alcohol, I did not. For me it was like 30 to 60 ml over the weekend (only whiskey, no beer as beer is high b6). The reaction on Monday was mixed, sometimes bad, sometimes not. There was so much happening that I could not isolate specific reasons beyond a point in any case.)

My timeline is summarized below:

1. Oct 2021 – B6 T surfaced. I ceased supplementation.
2. Nov 2021 – Jan 2022 – recoil – new symptoms, worsening of old symptoms, disappearance of some old symptoms (I was not on the protocol)
3. Feb 2022 – July 2022 – roller coaster swinging between bad and worse. (still not on protocol, came to know about it in May 2022 but just could not implement it well enough for another two months i.e. till July 2022. Between Oct 2021 and July 2022, core symptoms like shaking, hand tremors, muscle weakness and spasms never went away)
4. August 2022 – Dec 2022 – Tried sticking to the protocol as much as I could as mentioned above. Experience a very painful withdrawal of b6 as it started leaving my nerves (through b6T diet) and muscles (exercise). Some symptoms went away, core symptoms (pain, tremors, depression, dizziness etc.) remained the same or worsened for weeks at a time.
5. Jan 2023 – till date – over a month of sustained relief for the first time since Oct 2021. The tremors are significantly diminished (still surface from time to time but I am not that clumsy anymore, I don’t feel as it my mobile phone is going to jump out of my hands every time I hold it), the dizziness and breathlessness is intermittent (fairly manageable and does bot trouble me physically or emotionally) and almost all other moderate, minor symptoms are gone. For the first time in nearly 15 months, I am able to work without hindrance and am beginning to feel relaxed. 

My learnings:

1. Depriving body of excessive incoming b6 is important. There is simply no other way around this. We have to follow the RDA B6T diet to the best of our ability, for our nerves to heal.
2. Water, salt (sodium & potassium), electrolytes and sugar have a very important role. Hydration is not just drinking lots of water. The recommended additions to water (salt & sugar) and upping potassium matter a lot in transporting nutrition and maintaining essential healing abilities (read more about sodium, potassium pump and the role of sugar in delivering nutrition. The members, especially Beth, know it all too well.)
3. Exercise, but don’t over do it. Try and cover as many body parts as possible. Especially the ones, that are affected. Once I started working on my hands (instead of just my legs while running), I think I recovered quickly. Weights worked out great for me.
4. We are all different. And yet, the protocol works for us all. Its just about time.
5. This website, the FB page and the people who run it, are saviors.
6. I am never touching another artificial or natural supplement again in my life. 

My outlook:

1. I am not healed a 100% yet. Been only 6 months on the protocol. I intend to stick to it till at least mid 2024. That would be 2 years on the protocol and 2 years and 9 months since stopping supplementation. Going by my time line so far, I am quite hopeful that I would recover fully by then. 
2. I may have a big rebound coming or several smaller ones over the next 12 months. Knowing what I know now about healing, I am cautiously optimistic about riding these waves out. I have learnt that when my symptoms do not trouble me much, it is easier to follow the protocol and wait out the remaining period for incremental healing.
3. I hope to go back to a normal routine (regular unrestricted diet, regular hydration, a bit of exercise every week), in about 12-18 month’s time.)

Summary:

1. This is easily the toughest thing I have done in my life. The weird symptoms and the ignorance of the root cause nearly debilitated me.
2. I cannot thank Beth enough for doing all that she has done and continues to do. She is like my guardian angel.
3. The website and the FB page are a great place for you to seek refuge during this crisis and learn about how to heal yourself.   
4. If b6T is your issue, the protocol will in all likelihood work for you. Just give it time. My sense is around 2 years on the protocol should heal the most difficult of cases to a very large degree, i.e.to a point where b6T does not hinder life on a daily basis. 

Shane V.

Dear all, so I have officially been diagnosed with length dependent small fibre neuropathy dysautonomia. Due to vitamin B6 toxicity. I have written other posts for some background.

Beth, I would like to endorse these doctors and if anyone is in EU or Switzerland, they will help. Dr. Joël Cuénod in Basel, Switzerland and Prof. Einar Wilder-Smith at Kantonsspital Luzern, Switzerland.

My PCP (Dr. Joël Cuénod ) at first had no clue about B6T. But now has a full understanding through my case. He referred me to Prof. Einar Wilder-Smith who runs a specialised SFN clinic and is very actively involved in SFN research.

In Luzern they put me through the works. Multiple tests were conducted; blood, genetic, neurological i.e., tilt table, sweat tests, punch biopsies, EMG etc etc to rule out any other underlying causes.

All tests came back normal except for a small part of the sweat test and the punch biopsy. My calf has 60% less nerve fiber density and my thigh is ok. That is classified as length dependent small fiber neuropathy. The only thing out of my medical records that is an anomaly is high B6 when symptoms started. Hence, the diagnoses due to B6T. Otherwise if I didn`t have that, it would be idopathic.

The good news is that Prof. Einar Wilder-Smith said there is a very good chance for recovery and sees recovery in many SFN patients including those with COVID. It just takes time and emphasised patience. 2-3 years was his estimate, but who knows? I am not putting time on this. He said the nerves do heal and grow back at around 1mm a day. He also recommended aerobic exercise as the choice of exercise to focus on. He also said that this should not put me at risk for any other diseases or reduce life expectancy. It will only impact quality of life. Which, I felt was good to know.

We had quite a long consultation regarding my results, around 1 hour. It’s too much to write in one post. But if anyone is interested or has any questions I am also very happy help. The support group already has a wealth of info so most of our questions are already answered there.

Now the best treatment going forward is sticking to the protocol. Aerobic exercise and rest. With time, it should all improve and heal.

Noel B.

In the next couple of weeks I will hit my 1 year mark since the last time I took a supplement with B6 in it. 

A few observations: 

Your greatest friend is TIME. For some it’s 6 months, for others it’s 2 years or more. I can see that. Nothing will help more than time. Be patient. 

Salt, water and potassium is key. Hearts of palm, dried apricots, almonds or almond butter, coconut water are all relatively low in B6 sources of potassium. 

RDA B6 is also important. Chronometer is your friend.

Do not assume that any given food is causing symptoms. While this may be the case, it could also be coincidence as symptoms come and go seemingly at random. I needlessly painted myself into a food corner causing me more grief than necessary. Sometimes, you’re just in a cycle, a wave and you just have to ride it out. There will be ups and downs.

Exercise. It’s also super important. Start gradually. Don’t push it. 

Cold showers. I don’t know what excess B6 combined with a dehydrating event does to your vagus nerve, or to the production of neuro transmitters, but it ain’t good. It’s well above my pay grade. I can tell you however, that daily exposure to cold water can help with both these things. 1 to 2 minutes full cold, full body, works wonders for me. It seems to build too. The effect grows with consecutive days, weeks that you do it.

At just about a year, of these symptoms: Lightheadedness/dizzyness/vertigo, anxiety/panic, restlessness, electric buzzing in extremities, internal vibration, extreme light sensitivity, bounding pulse, tinnitus, whole body tremors/chills, insomnia, ocular migraines, involuntary muscle twitching everywhere, gait/balance problems, depersonalization/derealization, mild neuropathy, nerve pain in hips. Only mild anxiety remains, and it’s gradually dissipating. 

Medication. I’ve been pretty open about having to take anxiety medication throughout this process. Not everyone gets that extreme anxiety/restlessness/agitation, 24/7 fight or flight. But for those that do, medication may be necessary. Do not feel shame, use with caution and most of all respect. 

I’d like to thank Beth Smarzik and everyone else in this group that has answered my questions, and shared their experiences. Without you guys, I don’t know where I’d be. 

My journey is by no means over. Almost there though, I can feel myself coming back in a few, but ever more frequent precious moments at a time.

Tim M.

15 weeks since I stopped supplements. 12 weeks since my blood levels got to the normal range. 

I had bad neuropathy in my feet and lower legs for a year prior. My first neurologist just thought it was post Covid pain. It all started right after Covid coincidentally. 

Hired a new Neuro and he tested for b6 right away. Once I learned it was 6x the normal amount, I started the protocol. I cannot put to words how upsetting it is to have my first Neuro not know what to do and have me take more B vitamins. 

Once I quit supplements, symptoms spread fast. It was real bad for about 6-8 weeks. Had 2 weeks where I felt like I was living again. Felt super positive and encouraged. Last 2 weeks, symptoms have changed, moved, worsened, etc. Truly a roller coaster ride. 

Overall, the last month or so I’ve been able to tough through things I enjoy again like playing with my kids and coaching baseball. Every day I have at least 1 hour of what I call “less terrible” moments that I didn’t have for the last year. Assuming I’m in a hard rebound right now. I will continue hydrating, watching my diet, and working out. I can’t stress how important lifting weights, hydration, and exercise has been for me. 

I’m posting this so everyone knows that this is hard on everyone. We all have ups and downs. Keep hydrating, working out, eating right, and stay positive. Be kind. Lean on each other. Manage stress. We can do this!

Robert C.

I had all that stuff at 8 months- the fatigue, nausea, brain fog, blurry vision, teeth pain, back pain, neck pain, tinnitus, muffled hearing, ears that snap or click on the phone, sound sensitivity, photosensitivity, insomnia, headaches, on & on. They would rotate randomly but were intense. At 11+ months the pain now seems gone. Since 2-3 weeks ago no teeth pain, back pain, or any random pains. No nausea or insomnia anymore. Tinnitus is mostly good now. My 2 most persistent symptoms at this point are brain fog & random waves of fatigue which have been most consistent since all this began. Try not to freak out! For tests I’d be curious about iron, thiamine & copper through ceruloplasmin. Just seems a lot of people have issues with one or all 3 of those. And yes sodium/potassium/glucose is smart. Goodluck!

Tyler K.

Yup, I had a lot of these, with sleep jolt awakenings upon falling asleep with psychological doom, terror, negative imagery, and woke up with ataxia/glitchy spinal movements. Greatly worsened with melatonin, dehydration, or eating too much dietary B6. I’m almost at 7 months now, have had months with no sleep jolts, but this last week had about 4-6 nights in a row. The good thing is, though the jolts are still happening, the psychological doom/terror/nightmares goes away. Now I just get jolts but the nightmare aspect of it is minimal to none. This has decreased linearly since stopping b6. Mind you, I took 104 mg+ daily for 10 years, blood at 177.1 ng/ml, and at the peak of my toxicity got 2 mg b6 injected straight into my bloodstream, which is what sent me over the edge. There is hope on the nightmare front!

Collin S.

Hey All! Just wanted to share my story as I know coming to this page and seeing everyone else’s progress really helped me. In August of last year, I noticed I kept losing weight and was down over 20 lbs without trying to lose. I was having really bad night sweats like I jumped into a pool. My bones hurt, my legs and arms felt numb, and I couldn’t even work in the yard without being exhausted. There were times during the day when I would get really nauseous out of nowhere.

My general doctor started with basic test and everything came back normal. Because I felt so bad, I stopped taking my ADHD meds and stopped drinking Red Bull as I was drinking a couple a day. There was a month or so that went by that I started to feel better. At some point in October, I added in a multivitamin thinking it would make me feel even better. A daily serving of the vitamin had 2500% B6 daily value. After a week, I started feeling really bad again, but even worse than before. I started having really bad anxiety and electrical shocks in my head. My neck was so stiff and I was having internal vibrations. My heart felt like it was tired and my heartbeat per minute was ranging from low 30s to low 40s.

After many visits, my general doctor ran every test he could think of. All tests came back fine and at this point I figured I was going to have to about to die before I would get the right attention. In late October, I had a panic attack which I thought I was having a heart attack. I was admitted to the hospital and every test and scan they ran came back fine. On the last day, Neuro ran a B6 test and I was discharged. I came home and after a couple of days I started taking the vitamins again. I immediately felt worse and started to wonder if it had something to do with vitamins. After a week, my B6 test came back at 3x the normal level.

I found this group a week or two later and my symptoms matched everyone’s on here. I started on the hydration protocol but instead of listening to the website, I cut out everything B6 (Don’t do this). I felt good for about a month, but in late December, the biggest wave of depression and anxiety hit me that didn’t even know existed. Still not sure if this was rebound or recoil but it was terrible. I started to up my B6 to the RDA and have tried to stay near that ever since.

Once I started on this recoil/rebound stage, everything mentally came in. I was having intrusive thoughts. I felt like I was in the mind of a terrible person and didn’t feel like myself. I had thoughts and urges of self-harm that I couldn’t control. I even had to take my guns to my parent’s house because just being around a gun gave me so much anxiety. I was scared to be alone. I felt like I always needed to be around people but was so tired, it was hard to go out and do things. If you are having the most insane thoughts, you are not alone.

During this time, I had to take on life hour by hour, meeting by meeting at work. There were some days I don’t even know how I got out of bed. I would get to work right at 9, leave right at 5 and come home and sleep. I constantly felt like I was on a boat, my breathing felt like I had to control it, like it didn’t happen naturally. I’m already ADHD, but I couldn’t focus on any task. Every task seemed like it was the biggest task ever.

In January, I ended up getting put on a SSRI and mood Stabilizer as I couldn’t fight it alone. If you need meds, don’t feel bad about it. No one will truly understand the hell that you went through/are going through. It was honestly embarrassing for me to tell people I overdosed on a vitamin. It’s almost like people think oh it’s a vitamin, no way that’s causing your issues.

Things have gradually gotten better over the past 6 months. The only symptoms that remain are anxiety, and intrusive thoughts but I’m working with my doctor to get my medicine right. I’m grateful to have gotten to the other side of this and be able share it gets better. However, prepare for the fight of your life if you are affected mentally. Inbox is always open if you have any questions about my experience. Thank you Beth Smarzik and all for helping me through this. Fights not over but getting easier day by day.

Christine D.

Hey everyone! I thought I would share my healing journey to give hope to others who are just starting their journey. I became toxic from Metagenics Methylcare b complex vitamins. The daily dose of Methylcare contains 1471% of B6 and 42,000% of B12 and 333% of folate. I took this for 5 days.  This vitamin was approved by my PCP. I suspect that I was toxic from b12 and b6. The last dose was 2/22.

Recoil started at the beginning of March, but I had no idea about recoil. I only figured it out after I found this group. I started protocol on 3/28/23. (My blood tests were already showing normal levels of b6 and b12.) April 10 – honeymoon stage began. Rebound hit May 25th (wasn’t as bad as recoil but depression, waves of nausea, shooting nerve pain were back and vision become weird again).

Rebound for me is exactly as the protocol describes it. Ups and downs and then you start to have better days and now I’m almost 3 months into rebound and most of my symptoms have subsided or are very tolerable. I still have little butterfly twitches, but I sleep well now. I feel back to myself, but I know I still have some healing to do.

The one thing I have done consistently from the start of the protocol was exercise and drink my water. I started walking and slowly built it up to walking and jogging and then added in weights. I walk every day no matter what….even if I am dizzy. I have always worked out for most of my life and I have two small children, so I had to function even when I just wanted to cry and lay in bed. I never took medication for anxiety or depression either. I had them but was too scared to take them because I didn’t want to confuse symptoms with meds vs. b6 toxicity.

I promise you will heal. Be strong. Have hope. In some ways, I am grateful for this journey. Life is precious and so is our health. xx 

My symptoms: Nausea and waves of nerve pain through my GI symptom, severe depression and anxiety (I cried every day for about 2 months). I don’t have a prior history of depression until this. No appetite, dizziness/balance issues, vision issues- light sensitivity, severe dry eyes, blurriness, headlights and stop lights were big halos. Nasal passages were completely dry, couldn’t sneeze, and had no moisture. Nervous jerks (I think they are called haptic jerks or something like that). Little muscle twitches. Couldn’t sweat at all. I felt like something was in my throat. Joint pain. Crunchy knees (my knees made all sorts of popping noises). Muscle pain in my back and abdomen.

Samantha E.

Hi everyone. This morning I had a turn. I’m just wondering if any of you have also experienced this sort of thing.

In case you haven’t seen my initial post last week I’ll just briefly catch you up. Diagnosed last week. Level was 7830nmol/L with a reference range of (20-190). I was unknowingly taking 120.8 of B6 daily between two supplements.

My blood/urine tests were all normal otherwise, two weeks ago and my MRIs also came back normal.

My main symptoms have been difficulty walking, fatigue, cramps, burning feet when trying to sleep, insomnia, night sweats, tremors in my hands and, on a few occasions, uncontrollable muscle spasms.

I had a good day yesterday. Other than needing my hour of afternoon nap, I was able to get around well and felt like my old self for the most part.

So this morning I was struggling to get around again. I got a little more energy back after breakfast and managed to pack some things in a bag. Mum had taken me off to my parent’s farm for a change of scenery and we had to come back today.

I got down on the floor to pat and cuddle my dog and it was so nice, then suddenly something changed in my brain and I had to fall to the side and it was like my brain was woozy. My leg started spasming and I was barely able to reply to mum when she spoke to me. I felt frozen. She tried to get me to stand up, but I couldn’t. Mum is in her 70s and doesn’t have the strength to pick me up off the ground. My head just felt underwater. I eventually fought and got myself up onto a chair where mum told me to put my shoes on while she loaded up all our stuff in the car. I could barely manage to tie my laces, like things were short circuiting. I felt nauseous. I froze again after one shoe.

A little later I got the second shoe on. Then I sat myself up and my arm was spasming. I couldn’t focus. My mouth was open and my head was lolled to the side. I noticed my vision was a little blurry in places. I felt shut down. My mouth was really dry. I was still alert, but not to full capacity. This time I felt closer to losing alertness than any other incident. Mum got me to use my walker and get outside. I struggled, but managed to slump myself and move my legs just enough.

My nausea got worse and as I got close to the car I started dry heaving a bunch. Nothing came up and I made it into the car. I drank some water and slowly started to feel less nauseous. As I tried to talk there where moments I struggled to get words out. I had freezing cold hands and feet and mum put on the heating so I could warm up.

After about 20-30 minutes I felt recovered in my brain. I checked my fitbit and found I had a heart rate of 114 at 12:38 and then two minutes later it had dropped to 89. I’m wondering if this is my blood pressure dropping and not enough blood reaching my brain. It’s really scary to experience!

Attached a few video examples of previous symptoms.

Hoping this is not outside of B6T as I really don’t need another illness going on!

Kristine Y. (In response to Samantha E.)

My symptoms were this severe. The day my firrst B6 results came in, I went to the ER because I couldn’t walk, talk, do anything. As soon as I walked in the door to the hospital they called me a Code Stroke and rushed me to an MRI etc. My speech was slurred and the right side of my body didn’t work, shaking profusely, blood sugar off, blood pressure off, lots of blood volume symptoms, tons of symptoms. It was all the B6. I started the protocol and it took me about 3 weeks before I felt like I could walk, talk, and function better. I am 7 months into the protocol and I feel significantly better. I feel like the protocol saved my life. Hang in there!!! Sending you healing vibes. You are doing amazing. This group is a wonderful resource.

Sherri H.

13 month follow-up: 

My healing story: I’ve been toxic > 10 years. I am 60 years old now and have considered myself to be physically fit all my life. My doctors have always said I’m perfectly healthy. Through my toxicity my doctors have marveled at how healthy I am. 😉 My bloodwork labs were always good, no prescriptions, BP always low/normal. I exercised daily. Yet I felt horrible! 

Early -mid 40s I stopped birth control and started taking a prenatal vitamin just in case I was to accidentally get pregnant. One night I had 2 margaritas and got in a hot tub and within 30 minutes I had a bladder infection. Dehydration event. 

I started having what I thought was post menopausal symptoms from what I thought was coming off of birth control pills. Some of my symptoms were extreme hot and cold dysregulation, dizziness, eye floaters, nausea, dry eyes. I had bruising after massages, wrist drop (ulnar nerve damage) after a massage, low back bulging and herniated discs with pain, unexplained knee pain for >2 years, neck pain, sciatica, IBS, thoracic outlet syndrome, insomnia, tight calf’s and feet. Then I started having tingling toes when I would awake in the mornings.

At age 50, the 1st neurologist said tingling toes was a part of aging. Finally after 5 years of tingling toes and no answers from other docs, in 2017, my new PCP at the time tested B6. I was toxic. At that time I was only taking an OTC multivitamin for women and had stopped the prenatal vitamin. I’ve always taken supplements. I was 3 x the norm. I went to a new neurologist and diagnosis was PN, doc said should go away in 1 year after stopping supplement. IF, my PN does not go away, my PN is related to my back problems. PN did not go away and I thought was related to back. My feet, knee, neck, back, shoulder, and elbow pain and PN had continued to get worse. I exercised daily and of course took supplements for pain, but to my knowledge, no B6.

After seeking many many practitioners, in Feb 2022, I went to an Acupuncturist who specializes in working with PN and cancer patients. She told me my body was depleted from being a pescatarian and before that a vegetarian. I started eating lamb, chicken and turkey. My PN symptoms began to explode! It felt like a dam went off in my body. PN was everywhere, including scalp, internal chest, burning skin, sacrum, head, and hand tremors, and I had trouble with my brain and speech. I knew then my PN was not related to my back. I also saw 2 other neurologists and questioned if PN was caused from my diet. “Absolutely not” one said. “It’s idiopathic and will only get worse.” 

Desperate, I saw a functional medicine practitioner in June 2022. A lot of blood tests again (none were B6). Prescribed about 15 supplements including 100 mg B6, 600 mg magnesium, 8.7 mg B6 in liquid multi vitamin, B12 shots, and I had 6 B IVs during 2 week time span. I was a mess!!! I questioned my B6. No- could not be related I was told. 

During this time, I decided to move as I so desperately wanted to see a “good” neurologist who specializes in neuropathy because I thought I was dying. I moved from NM to NC to see a neurologist specializing in neuropathy at Duke (could not get appointment if living out of state and Mayo Clinic in AZ had denied me as private pay). My appointment was on 12-9-22. Again, a lot of bloodwork (no B6 test EVEN after I showed her my list of supplements and her comment was “these could be making your symptoms worse”!!!) The outcome of this meeting was a 4 month follow-up. That was it. 

I was at my lowest. I FINALLY accepted idiopathic PN as my fate and joined a FB PN group, then a B12 group. And that’s how I found this group on 12-16-22. I WILL BE FOREVER GRATEFUL! 

Because of this protocol, I feel in control of my health. I’m in rebound. I’m finally healing after all these years of suffering. Someone posted a question regarding how do we know if we’re in rebound or if our SFPN is just getting worse? We know because we trust the research on B6 website, we trust the stories and people that have gone through this before us and who have shared their healing stories. We know because we are on this healing journey. We are the research. I feel about 75% healed. 

My story shows me and validates this protocol that I must follow the hydration and RDA B6 diet to heal. In addition to my exercise. When I stopped supplements alone in 2017, I did not heal. I remained toxic. When I changed my pescatarian diet to a high B6 food diet including chicken and turkey, a dam went off in my body. Foods matter. Hydration matters. I get it because I am healing. 

I no longer need a doctor or any other health practitioner to validate my healing journey. And this is so very freeing after searching for answers for so long. Thank you everyone and especially Beth Smarzik and moderators for your support, wisdom, time, and sharing your healing journeys. 

My 3 goals for this year: 

1 My health is my number 1 priority. This diet is my key to health. Stick to the protocol. 

2 Share my story with others. I am very confident there are many out there who are toxic. This is a widely unknown epidemic and sharing it with everyone is important to help increase awareness. 

3 Have a fun balanced life. I have had little time, effort to explore interests other than taking care of my pain and trying to figure out what’s wrong with me. I’ve lost a big chunk of my life to this toxicity. I’ve started exploring some non physical activities such as board games, pleasure reading, and even tolerated sitting for a 2.5 hour intro to sewing. 

Life is short. Today is today’s day. Enjoy. Follow this protocol so you can get on with your life. Like me, you’ll never be the same. Only a much better and wiser person. Be well!

Chris M.

TODAY MARKS ONE YEAR ON THE PROTOCOL FOR ME! Wanted to check in on this special day. 

Symptoms that have resolved:

-panic attacks

-general anxiety (except after caffeine)

-chronic fatigue

-brain fog

-heart palpitations

-appetite fluctuating

-“tight” / “pulsing” nerves

-short term memory/ADHD

-chest tightness after sex

-no lobido

-mood swings

-being angry out of nowhere

-dry eyes

-dry mouth

-neuropathy

-blurry vision

-hearing issues

-nerve twitching

Currently ongoing symptoms:

-blood volume (biggest issue always)

-cannot tolerate caffeine at all

-migraines

-left eye symptoms

-GERD

-stiff neck (left side only)

-constant dry spot in throat

-bladder issues

-one or 2 spots where it feels like the nerve is occasionally stiff

The current ongoing issues come and go, I don’t have some of these even currently but had them a few weeks ago so just wanted to be transparent.

Cheat meals still bother me, even going .2 over the RDA I get a flare so I don’t go over. I drink salt water always, and try for as much sleep as possible.

I workout every other day, and eat 90% carnivore diet. I pretty much have my life back besides these small setbacks, oh and I miss steak a lot. Hope everyone is healing .

Christopher F.

1/22/24

Rebound over?? Follow-up to my Dec 7 post titled “Rebound Starts” for those kinda tracking it and also to help some understand this rebound ride. For reference I’m currently at 8.5 months healing since finding out I was toxic. I was toxic for about 5 years with symptoms mimicking MS at times and more autonomic issues. I’m on the protocol and focus on a diet close to RDA and a daily exercise and yoga/meditation regime. I’m an actor and musician, but also a safety consultant and toxicologist/industrial hygienist by profession. This is my second rebound with my first (I believe) that happened back in September with COVID and a colonoscopy cleanse that happened at the same time. Might have been a bad, long flare. 

I traced this rebound phase in my journal back to Nov 27 (6.5 months in) when I took a flight to Maryland and I think had a histamine reaction while there, as well as after eating over 220% RDA accidentally at Thanksgiving a few days before (not really accidental…but the food was soooo good). So a perfect storm in a span of a few days that led to rebound. 

Rebound symptoms that started it included my swallowing reflex stopping, severely dry skin and dry mouth, body tremors at times, neuropathy in feet, brain fog, vision issue, body aches and sore muscles, burning thigh, elevated resting pulse and BP at times, heart PVCs and arrhythmias, insomnia and less sleep (4-5 broken hours a night), gastrointestinal issues and fatigue were all the heavy hitters. These would be off and on through out rebound. 

One day might be just neuropathy and insomnia. The next day vision issues and heart rate/BP. One day most of them would hit, and then the next only get fatigue. Never a constant, just random. And would always wake up symptom free, every day. And then as the day progresses the symptoms would present and I would see what the day would entail. The only constant symptom this rebound was the lack of sleep, the swallowing reflex issue and severely dry mouth/skin which was worrisome and caused some eating issues (some days I barely got 900 calories and 33% RDA). It would last a week or more, then get better for a week or two, then hit again. I had a mini honeymoon phase of about a week or so in the middle of almost no symptoms, but then it started back again. Granted, I was traveling during this time and that seemed to aggravate it and probably started the rollercoaster again. 

I am currently at 7’ish weeks into this rebound ride and so far I’ve had 4 days of minimal to no symptoms and the swallowing issue has resolved to about 25%. I finally slept 8 actual hours for the first time in months Friday night, and then Saturday 7 hours!! The neuropathy is still slightly there at night, but it’s barely noticeable. And if I get up and walk it goes away. 

I was doing better 2 weeks ago and then took another flight to Florida and the swallowing issue came back along with tremors, vision issues and a whole host of things. When I got home some of my really old symptoms came back. I woke up one night and my entire right side of my body was going to sleep. My arm and leg (calf to foot) and my neck and shoulder was falling asleep. I got out of bed and walked it off some, but the sensation was still there and my back started burning. The whole next day my arms and legs were weak and heavy, and had some slight coordination issues. These were my very first symptoms that happened 5 years ago, and hasn’t happened in years so it was shocking. But I didn’t freak out (ok, I packed a bag for the ER just in case…but didn’t go ). Two days later it acted like it was happening again slightly for a few hours, then went away. After a day or so, was all back to normal. 

As of right now, I feel wonderful mentally, emotionally and physically. The jaw and throat are still weak and sore, and occasionally I can tell the swallowing issue is faintly present when I eat or drink, but it doesn’t happen. My skin is still really dry, but it is crazy cold weather here in Arkansas (USA) so that’s a factor. But I’m back to eating right, back to the gym and working out, and focusing on work. I took myself off the road and travel until March to allow myself to heal. Talking a lot still causes some crazy dry mouth, which leads to the swallowing issue, so no singing or teaching for awhile. And I opted out of some film projects that would tax my body and were dialogue heavy and could cause the talking/dry mouth issue, and that sucked. But I want to focus on healing and enjoy some minimal symptom time. Let my body heal, and let it recharge properly. I’m horrible at pushing myself and making it worse. Not anymore. Health and happiness is priority number one now! 

I hope this can give some new members here hope that if you are going through recoil or rebound, or even a flare, that eventually it will subside. Keep hope, keep your patience, bare through it and you will come out on the other side…eventually. It never feels like it when you’re in the depth of this craziness, but there is light up there shining, and the clouds will part. 

Keep a journal of symptoms so you can trace back and can tell your specific timeline of flares and healing and also tell your triggers. Write down all your symptoms each day, and when and how they happen. This can tell you so much. Mine seems to be a week or two of the worse symptoms and then it starts tapering off for a week or two. Air travel aggregates my symptoms and sleep seems to be an indicator of a flare and/or rebound. When my sleep starts dropping, a flare or rebound is coming on. When sleep comes back, it’s a signal it’s getting close to over. New symptoms came with the this rebound and with my first, and some older ones snuck their evil head back in as well. But because of this group, and tracking my symptoms, anxiety was at a minimum thankfully. 

Keep trucking, keep living, and keep patient! Time is an ally.

2/10/24

Today marks my 9 month mark on my healing journey. I’m currently sliding out of a pretty rough rebound period of 2.5 months, but the keyword is sliding out of it. 

I posted a couple weeks ago, maybe a month ago, “rebound over” and I spoke a little too soon. A few days later it flared back up. Rebound is not a cut and dry, wake up one day and it’s over, linear process. It’s a rollercoaster that you have to gauge the little wins each day and then look back and say “I think it’s coming to an end”. Flying aggravated this rebound about halfway in, so that probably added to a lot of this and extended the timeline. 

This rebound the biggest symptoms were my swallow reflex, lump in throat and severe dry mouth episodes which made eating and even talking a scary chore at times. Plus side I lost 10 lbs. But other symptoms included neuropathy, POTS symptoms, sleep issues (5.5 hours a night average and wake ups between 2-3 am nightly), mild heart rate increases, brain fog episodes, crazy wrinkly and severe dry skin, and a few of my old toxic symptoms coming back that included random numbness in my right side (woke up at night to whole right side of body asleep), body tremors and a few I’m probably forgetting. I had to eat a very selective diet, fight to get some calories and B6 in, had to go on no talking orders for three weeks cause talking created swallow issues, be a hermit, and a few days of couch duty. I also had to cancel all my trips and projects which hit the pocketbook hard, but I needed to focus on healing more. 

But thankfully, it is finally easing up. Yesterday I felt absolutely normal for about 8 or 9 hours. Eating breakfast and lunch felt normal. No issues. Then in the afternoon some of the issues slowly came back, but bearable. Still not sleeping well, but neuropathy has been gone for about 2-3 weeks, and the only symptoms now are some mild lightheaded moments and the swallow issue is still lingering, but it’s at about 40% or less and only at night really.

I’m finally back to walking, yoga and mediation daily, slowly working the gym back in but light weights that’s tolerable and not causing lightheaded moments. My diet is getting better and adding more foods and meals in. I’m out of the no talking period, but it’s slow going as three weeks of no talking made the voice rough. I’m still not traveling, not doing acting projects or singing fully yet, and social life is slow going, but life is finally coming back on line out of rebound. Today I’m having band rehearsals for the first time in 2 months, so that’s a huge win. I had more hope from day one because of the support of this group, so even at 2 months I always felt “just give it time man, you’ll make it through. So many others have!” 

For those that are new to the group. How do I know I’m coming out of rebound? The same way I knew I was in rebound. Gauging and tracking symptoms. When all the symptoms started flaring and lasted more than a few days, I knew I was in rebound. And now, it’s been a handful of days with minimal symptoms and each day is less and less, so I know I’m coming out. I may still have a few more weeks of sliding out of this, but that’s ok. It is a nerve racking (pun intended), up and down rollercoaster, but the ride is slowing. I’m at 75% the last couple days, and that’s a huge, HUGE win. Yesterday I felt at 90% most of the day, and that’s a beautiful feeling again.

F Cluggins

One year healing anniversary post:

Got toxic from GNC multivitamin, high B6 diet, and Liquid IV. Went through battery of neurology tests. Negative for MS and other possible causes.

Initial symptoms:

• Tingle/Numbness in fingers, toes/feet, and tongue. Especially when making contact with anything hot.
• Severe brain fog at about 3 months, lasted about a month.
• Joint aches and pains in wrists and knees lasted about a month and appeared separately.
• Anxiety for first 6 months.
• Weird GI sensations. Gerd.
• Body responded differently to certain foods/drink like tomatoes and beer.

Current symptoms after a year:

• Most of the first symptoms subsided after 6 months with occasional flares.
• Had a rebound right around when I got the flu really bad around 9-10 months. All symptoms except for joint pain and brain fog came back full strength. Lasted about a month.
• Still have some mild numbness/tingles when eating hot foods or touching hot things.

1 year mark summary:

I still have mild symptoms but nothing that gets in the way of living a full life. I eat pretty much anything without issues but am mindful of overeating in general especially foods that are known to be high in B6. Used to be a craft beer drinker. Now I barely drink anything at all but when I do it’s usually a seltzer of some kind or cocktail. Lost taste and preference for beer entirely but will have a one, maybe two when that’s all that’s available.

Exercising, staying active, staying hydrated with plenty of water, salted water, coconut water, and now I have developed a La Croix habit.

Not completely healed. Doesn’t feel like that may happen but I’m accepting that very mild symptoms may be permanent. I hope not but what I have now is something I can deal with and not really a point of worry anymore. I will continue protocol-lite as I like to call it and just eat in moderation, drink in moderation, stay active and hydrated.

Good luck to everyone and happy healing.

Christina D.

Happy Friday!

This is my healing story; it’s a long one, so maybe wait until bedtime. LOL. 

I know many of you are just starting your journey and are terrified of what lies ahead during this long, frustrating journey, and a year ago, I was in your shoes. A year ago, this week, I stopped taking supplements that I had been taking for about six days. The dose was 25 mg of B6 (1,471% of RDA) and 1,000 mcg of B12 (41,667% of RDA). I believe I was toxic from the b12 and b6. I never knew how toxic I was because I didn’t take a blood test until about three weeks after stopping supplements (my levels were already normal and below normal), but as you can see by my list of symptoms, I was toxic. LOL.

Here were my symptoms:

Severe Anxiety and depression

Low blood volume

Vision issues (I had them all except visual snow)

Nerve damage in my nasal passages (extremely dry sensation)

Tinnitus

Feeling of fullness in my ear.

Acid reflux

Nausea

Loss of appetite

Upper back pain

Joint pain

Crunchy knees

Brain fog

Breast soreness

Shooting nerve pain randomly

Nerve issues that made me have little muscle twitches and the feeling like there was a butterfly all over my skin.

Extreme fatigue

Insomnia

Cold hands/feet

Body temperature issues.

Dizziness (this was horrible, lasted about 9 months)

Dry skin

Hair loss

Skin irritations

Leg pain

Jerking sensations

Dry skin

No sweating

Muscle weakness

Panic attacks

Dehydration

Many of my symptoms occurred on my right side.

I think I had more symptoms but this is all I remember and/or wrote down. 

I think one of the hardest symptoms to deal with is fear. The fear that something is terribly wrong with you and you feel like you have all sorts of diseases and conditions, but actually, it’s just your poisoned body trying to rid your body of this toxin. Your systems and organs are inflamed and it takes time for your nerves and body to heal and work properly again.

Stopped supplements 2/22/23

Recoil hit 3/9/23 on our way to Taos, NM (I had no idea I was in recoil because I hadn’t found this group yet) I didn’t know what was wrong with me so you can imagine with the altitude and dehydration how awful I felt. I even skied and felt even worse. I can laugh about it now.

I had a big honeymoon stage until 5/26/23 when the rebound hit and stayed with me through most of the summer until mid-August. My rebound was about 2.5 months. Rebound was worse for me because it lasted longer than recoil but the symptoms were equally difficult.

Mini rebound during month 10. Nothing crazy, I still enjoyed the holidays and was grateful for my healing journey.

I am not completely healed but I am physically and mentally stronger than I’ve ever been. I’m happy. I can play tennis, lift weights, do burpees and mountain climbers. I work out 5- 6 days a week (walking, lifting, stretching, tennis, HIIT). I’m a teacher, have very active kids, and coach volleyball. During this entire experience, I remained active not because I really wanted to but because the alternative was to sit at home and cry and feel like crap, so I fought hard and took one day at a time. My doctor didn’t know if I was going to heal because she had never heard of b6 toxicity and neither did her circle of colleagues. I felt lost, alone, ashamed, and suffered in silence. The only other person who really knew my pain and suffering was my therapist and my husband. I don’t think my husband really understood the magnitude of my suffering because I rarely spoke of it other than “I’m having a hard day, I just need to rest”. I knew I had this amazing group, but I was so scared of reading more posts about how hard the healing journey was that I chose not to engage for the first 3-4 months, but now, looking back, I wish I had. I probably would have felt less alone and better knowing everyone was going through the same thing. Fear is real and debilitating. I endured this journey without taking any meds because I was too scared of how they would make me feel and I didn’t want to confuse my symptoms with side effects from another drug.

When I took the b6 supplements, I thought they would help my depression. I was severely depressed from a PPI I was taking for a GI bug I caught while I was in Mexico City on a couples trip. I was skinny fat, I had more fat on my body than muscle, and I wasn’t doing anything to excrete the excess. This is important because people often ask why some people become toxic and others don’t. there are many reasons, but for me, this is why I think I became toxic.

My remaining symptoms (for now):

Very mild and sporadic little butterfly twitches

Mild and sporadic little muscle jerks

Tinnitus (clicking randomly) IMO I think the ears take the longest to heal.

Upper back numbness on my right side, doesn’t hurt at all. I know it’s just my nerves healing.

Occasional crunchy knee

Tightness in my neck

Soreness (but I can’t tell if this is from nerves healing or my crazy workouts, perhaps both)

Throat weirdness

But I feel good and enjoy every moment life is giving me.

My therapist asked me today if I could go back in time, would I choose not to endure this journey, I said I didn’t wish for anything to be different. I am stronger and happier than ever and feel whole again. I fought too hard to get my life back and would never want to undo my hard work. I’m a better person because of this journey.

I asked the Lord to guide me through this, and in return, I promised that I would help as many people as I could with words of encouragement. It’s hard to have faith when your body is poisoned, and you feel so awful, so maybe I can help people find their faith and help restore hope. Thank you for reading this and message me if you need some hope or faith.

Beth was the only person who said, “You will heal,” and now I’m saying the same to you. Please know, if you are toxic from b6, YOU WILL HEAL!

If you want to heal, you must:

hydrate

exercise

eat low b6

stay positive

have hope

Anonymous

I want to extend my gratitude to Beth and all the members of this supportive community! I’m not sure I would have made it through without all of you. I’ve had numerous occasions where I thought I was improving, only to feel awful the next day. It took me some time to gather the courage to share this, but I hope it’s important and encouraging for those experiencing this challenging phase.

I self-diagnosed with B6 toxicity in early September, with my result showing 63.4, within a range of 2.1-21.7 ng/mL. I’ve been intermittently taking high-dose (50mg) supplements for two and a half years, recommended by a cardiologist, then a functional neurologist, and a podiatrist. It’s been exactly six months since I stopped taking the supplements and adhered to the protocol. Within just one month, my levels normalized to a lower range.

I underwent a difficult withdrawal/recoil phase, followed by a brief period of relief where my sensitivity to light and sound significantly improved. Unfortunately, this period was short-lived, and I’ve been experiencing ups and downs since November. The first two months of the rebound were worse than recoil.

My symptoms before discontinuing the supplements were severe, including constant anxiety, panic attacks, acute sensitivity to light and sound, predominantly left-sided tinnitus, muscle tension (especially in the neck, scalp, and TMJ), POTs, racing heartbeat, blue/black toes, bulging veins in hands, feet, and left thigh, severe bladder pain, difficulty swallowing, difficulty breathing, to name a few… I also struggled with mobility and dizziness and spent most of the days in bed for three years.

My symptoms have significantly improved. Currently, I’m experiencing pain in my hands, discoloration in my toes, occasional vertigo, sensitivity to light and sound, mild tinnitus, and difficulty tolerating extreme temperatures. Thankfully, anxiety has significantly diminished, which was one of the most frightening aspects for me.

Here are some things that have really been helping me:

• 🙏🏼 Sticking to the protocol: Drinking salt water has become a non-negotiable part of my routine!
• 👨🏻‍⚕️ Seeing a physical therapist: I’ve been seeing a physical therapist who provides home services. It’s been incredibly beneficial for addressing balance issues, vertigo, and releasing tension in my neck, jaw, and scalp.
• 🍀 Keeping a positive mindset: I recently started using the DearUniverse journal, and it’s been amazing for rewiring my brain from negative self-talk to thinking positively about the present and the future. Setting small daily goals and reflecting on them before bedtime has been incredibly helpful.
• 🌞 Finding joy in old or new experiences: Whether it’s picking up the guitar or trying something entirely different, embracing activities that bring me joy has been a game-changer in shifting away from anxiety. However, I also noticed that excessive joy can also lead to brain overstimulation and fatigue.
• 😊 Surrounding myself with positivity: Surrounding myself with positive influences such as uplifting news, shows, movies, and people has been transformative. Over the past three years, I’ve undergone a complete shift, including a change in my social circle, learning to set healthy boundaries, and developing a deeper appreciation for my time, my needs and my choices.
• 😆 Ending the day on a light note: Before bedtime, I make it a point to watch light and humorous content, aiming to carry that positive feeling into my sleep.
• 🫡 Taking action, no matter how small: Even when it’s tough, I’ve learned that taking even the smallest steps forward can make a world of difference.
• 🐣 Embracing new beginnings: Despite my fears, I also decided to get a puppy, and it’s been such a source of happiness, energy, and motivation in my healing journey.

I hope these tips help someone else out there too! Remember, we’re all in this together. ❤️

This group has been a source of comfort during this challenging time. With your support, I navigated through the difficulties and emerged stronger. I’m BETTER. And for that, I’m immensely grateful! 🙏🏼🌸✨

Robert C.

Healing really well now at 22+ months on the protocol. Adding exercise back in has been really hard. I tried at 19 months. Doing light resistance bands for 60 days straight. Then became really sick again for about a week or 2. The head pressure / fatigue / dizziness / anxiety would get really bad. Which would then trigger agoraphobia. I took a few weeks off. Now did heavy resistance bands 5 days in a row. Walked 2.5 miles yesterday (speed walking not a slow walk). Raked my whole lawn after that for 2 hrs. This was after a big storm so lots of heavy debris to shovel & move.

Woke up today confident I would flare. I did not flare at all. So I walked another 2.5 miles. And a few hrs later still feel mostly great. Tonight I’ll do some resistance bands then take a couple days off. As I’m def pushing my limits now. But I have >>>0 head pressure or tension. 0 dizziness/POTS/vertigo. No heart palpitations. No aches anywhere. The only thing is a slight increase in brain fog. The brain fog has been the longest lasting symptom so I’m still not ready for a full healing post. Probably another 6 months for that.

But any members who are behind me & still struggling…the flares really do get smaller & smaller. Until you almost don’t feel them anymore. I was UNBELIEVABLY sick when I came here. Using 50-75mg for 6 yrs and injecting that last yr. But if I can heal there’s NO REASON you can’t too. It just takes a A LOT of time & patience. Will update as I get keep getting better! THANK YOU BETH & EVERYONE FOR YOUR SUPPORT!!! It means the world to me.

Housebound/Bedbound

Recoil combined with Rebound is harder on some members.  When asked if anyone has been bedbound or housebound during recovery members responded.  Housebound is not normal for healing.  We just want others to know that it is possible.  

Samira R.

I was mostly housebound during recoil from month 1 – 4. Then I improved a lot and was able to go out again although I still had symptoms and would get fatigued easily. Then in month 8 I started rebound. It’s been almost 4 weeks and I have not left the house. I am still in rebound and have not felt any improvements yet. My symptoms are too unpredictable for me to feel save going anywhere. It would just cause too much anxiety. How about you?

Ginger K.

I was housebound from month 1-4 and started to have better days month 5-6. I was up and down, good days and moments and really bad days and moments. After month 6 I noticed things got better, especially every 3 months. Things got a little bit easier, little bit lighter. I was able to live more and function but I was still bothered by my symptoms but easier to push through. Month 12-17 we’re about 95% better and now month 18 I’m getting some more intense symptoms back but I’m still functional. Maybe 90%. It’s just an up and down journey. Try to push yourself when you can and not let the symptoms over take you. You WILL heal.  

Denise B.

I was house bound month 1-4 also things did improve after that but I’ve always felt part of my body was unpredictable , sometimes heart rate , sometimes gut , sometimes dizzy , it goes on. I never leave the house without salt water , hydrolyte , extra salt and snacks . I did function better between month 6 and 19 but never symptom free and as I said always unpredictable and there were some really bad flares thrown in . I’m now month 21 and wow I feel like I’ve been thrown backwards with the symptoms . Even the anxiety insomnia and eye symptoms have returned which I though had mostly resolved . As has already been said , it’s a long and up and down journey , we have to know from many on here that we will heal and get our lives back . Sending healing vibes to everyone.

Claire S.

I’ve just been housebound for the last 3 months (months 7-10 so guessing rebound) I’ve just started to do small things but definitely not back to being properly functional yet. I’m hoping it continues to improve

Helen B.

Update for Beth Smarzik. If you remember, I had chemo for breast cancer, and my GP said it was probably the cause of the PN in my feet, which started 2 years after treatment finished. The senior breast care nurse has since told me it couldn’t be chemo related so long after treatment and it was much more likely down to supplementation. So this has implications for your survey if it isn’t chemo related.

I had already started the B6T Protocol and have seen 80% improvement in the last 4 months; then today I finally saw a neurologist and gave him one of your postcards. He said he couldn’t do any more for me than I had already done for myself using your protocol and he was very aware of the dangers of B6 supplementation, so well done and keep on going with it.

I am definitely getting my mobility back and my zest for life and work has been given a huge boost, thank you!

See also: Pre-B6-Toxicity-Diagnosis Horror Stories and Beth’s Story.